Table 1 Participant demographics and clinical characteristics in IMPOWERa
Characteristic | Pediatric registrantsb (n = 119) | Adult registrants diagnosed after 20 years of age (n = 55) |
|---|---|---|
Age at enrollment, years | ||
Mean (SD) | 5.7 (4.4) | 40.2 (10.6) |
Median (range) | 4.4 (0–17.5) | 38.3 (22.6–66.7) |
Age category at enrollment, n(%) | ||
< 1 | 12 (10.3) | – |
1 to < 9 | 82 (70.1) | – |
9 to < 18 | 23 (19.7) | – |
18 to < 44 | - | 38 (69.1) |
44 + | - | 17 (30.9) |
Female, n(%) | 52 (43.7) | 51 (92.7) |
White Race, n(%) | 110 (94.0) | 55 (100.0) |
Region | ||
Northeast | 18 (15.1) | 14 (25.4) |
Midwest | 28 (23.5) | 17 (30.9) |
South | 46 (38.7) | 15 (27.3) |
West | 15 (12.6) | 9 (16.4) |
Age at diagnosis, n(%) | ||
< 1 month | 68 (57.1) | – |
1 month to < 1 year | 22 (18.4) | – |
1 year to < 5 years | 15 (12.6) | – |
5 years to < 10 years | 9 (7.6) | – |
10 years to < 20 years | 4 (3.4) | – |
20 years or more | – | 55 (100.0) |
Symptoms present prior to diagnosis, n(%) | 106 (89.1) | 54 (98.2) |
Time from symptoms to diagnosis, n(%) | ||
Under 1 month | 65 (54.6) | 6 (10.9) |
1 month or more to less than 6 months | 22 (18.5) | 6 (10.9) |
6 months or more to less than 1 year | 2 (1.7) | 3 (5.5) |
1 year to less than 5 years | 10 (8.4) | 8 (14.5) |
5 years or more | 6 (5.0) | 31 (56.4) |
No symptoms or unknown | 14 (11.7) | 1 (1.8) |
All symptoms reported prior to diagnosis, n(%) | ||
Vomiting | 86 (72.3) | 28 (50.9) |
Excessing spit up as a baby | 64 (53.8) | 7 (12.7) |
Lethargy/weakness | 47 (39.5) | 28 (50.9) |
Other | 44 (37.0) | 22 (40.0) |
Abdominal pain | 43 (36.1) | 51 (92.7) |
Constipation | 38 (31.9) | 37 (67.3) |
Swollen abdomen | 34 (28.6) | 31 (56.4) |
Pallor/pale in color | 32 (26.9) | 12 (21.8) |
Failure to thrive | 26 (21.8) | 7 (12.7) |
Diarrhea | 13 (10.9) | 27 (49.1) |
Primary symptom at diagnosis, n(%) | ||
Vomiting | 46 (38.7) | 5 (9.1) |
Excessing spit up as a baby | 18 (12.6) | 0 (0.0) |
Lethargy/weakness | 3 (2.5) | 1 (1.8) |
Other | 18 (15.1) | 6 (10.9) |
Abdominal pain | 10 (8.4) | 36 (65.5) |
Constipation | 1 (0.8) | 1 (1.8) |
Swollen abdomen | 8 (6.7) | 3 (5.5) |
Pallor/pale in color | 1 (0.8) | 0 (0.0) |
Failure to thrive | 3 (2.5) | 0 (0.0) |
Diarrhea | 1 (0.8) | 2 (3.6) |
Volvulus at diagnosis, n(%) | ||
Yes | 83 (69.7) | 15 (27.3) |
No | 28 (23.5) | 34 (61.8) |
Green or yellow colored emesis, n(%) | ||
Vomit/Spit Up Ever Green | 55 (46.2) | 12 (21.8) |
Vomit/Spit Up Ever Yellow | 70 (58.8) | 24 (43.6) |
Vomit/Spit Up Ever Red/Brown | 12 (10.1) | 4 (7.3) |
Yellow spit up shortly after birth | 52 (43.7) | – |
Pain constant or intermittent, n(%) | ||
Constant | 7 (5.9) | 9 (16.4) |
Intermittent | 29 (24.4) | 42 (76.4) |
No pain or unknown | 83 (69.8) | 4 (7.3) |